140 related articles for article (PubMed ID: 32424556)
1. [Patient registries for rare diseases in Germany: concept paper of the NAMSE strategy group].
Storf H; Stausberg J; Kindle G; Quadder B; Schlangen M; Walter MC; Ückert F; Wagner TOF;
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2020 Jun; 63(6):761-770. PubMed ID: 32424556
[TBL] [Abstract][Full Text] [Related]
2. [Registries for rare diseases : OSSE - An open-source framework for technical implementation].
Storf H; Schaaf J; Kadioglu D; Göbel J; Wagner TOF; Ückert F
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2017 May; 60(5):523-531. PubMed ID: 28289778
[TBL] [Abstract][Full Text] [Related]
3. [Seven years of the National Action League for People with Rare Diseases : NAMSE - a success story?!].
Halbach A; Schnieders B; Knufmann-Happe K
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2017 May; 60(5):479-486. PubMed ID: 28337510
[TBL] [Abstract][Full Text] [Related]
4. OSSE Goes FAIR - Implementation of the FAIR Data Principles for an Open-Source Registry for Rare Diseases.
Schaaf J; Kadioglu D; Goebel J; Behrendt CA; Roos M; van Enckevort D; Ückert F; Sadiku F; Wagner TOF; Storf H
Stud Health Technol Inform; 2018; 253():209-213. PubMed ID: 30147075
[TBL] [Abstract][Full Text] [Related]
5. [Measures to improve the health situation of patients with rare diseases in Germany. A comparison with the National Action Plan].
Frank M; Eidt-Koch D; Aumann I; Reimann A; Wagner TO; Graf von der Schulenburg JM
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2014 Oct; 57(10):1216-23. PubMed ID: 25209683
[TBL] [Abstract][Full Text] [Related]
6. The Registry Data Warehouse in the European Reference Network for Rare Respiratory Diseases - Background, Conception and Implementation.
Schaaf J; Chalmers J; Omran H; Pennekamp P; Sitbon O; Wagner TOF; Reis A; Kadioglu D; Storf H
Stud Health Technol Inform; 2021 May; 278():41-48. PubMed ID: 34042874
[TBL] [Abstract][Full Text] [Related]
7. [Rare diseases, digitization, and the National Action League for People with Rare Diseases (NAMSE)].
Wessel T; Heuing K; Schlangen M; Schnieders B; Algermissen M
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2022 Nov; 65(11):1119-1125. PubMed ID: 36239769
[TBL] [Abstract][Full Text] [Related]
8. Compatibility Between Metadata Standards: Import Pipeline of CDISC ODM to the Samply.MDR.
Kock-Schoppenhauer AK; Ulrich H; Wagen-Zink S; Duhm-Harbeck P; Ingenerf J; Neuhaus P; Dugas M; Bruland P
Stud Health Technol Inform; 2018; 247():221-225. PubMed ID: 29677955
[TBL] [Abstract][Full Text] [Related]
9. Achieving interoperability for metadata registries using comparative object modeling.
Park YR; Kim JH
Stud Health Technol Inform; 2010; 160(Pt 2):1136-9. PubMed ID: 20841861
[TBL] [Abstract][Full Text] [Related]
10. [Speak up for people with rare diseases: ACHSE : ACHSE, Rare Diseases Germany, and its network].
Mundlos C
Internist (Berl); 2018 Dec; 59(12):1327-1334. PubMed ID: 30377713
[TBL] [Abstract][Full Text] [Related]
11. Achieving Data Liquidity: Lessons Learned from Analysis of 38 Clinical Registries (The Duke-Pew Data Interoperability Project.
Tcheng JE; Drozda JP; Gabriel D; Heath A; Wilgus RW; Williams M; Windle TA; Windle JR
AMIA Annu Symp Proc; 2019; 2019():864-873. PubMed ID: 32308883
[TBL] [Abstract][Full Text] [Related]
12. Recommended data elements for health registries: a survey from a German funding initiative.
Harkener S; Jenetzky E; Rupp R; Dell J; Engel C; von Bargen MF; Finger R; Glienke M; Heinz C; Jersch P; Martin D; Schmutzler R; Schönthaler M; Suwelack B; Wegner J; Stausberg J
BMC Med Inform Decis Mak; 2024 May; 24(1):136. PubMed ID: 38802886
[TBL] [Abstract][Full Text] [Related]
13. [A registry of registries and cohorts: recommendations for metadata and policies].
Stausberg J; Semler S; Neugebauer EAM
Gesundheitswesen; 2014 Dec; 76(12):865-873. PubMed ID: 25525679
[TBL] [Abstract][Full Text] [Related]
14. Development of a pilot rare disease registry: a focus group study of initial steps towards the establishment of a rare disease ecosystem in Slovenia.
Stanimirovic D; Murko E; Battelino T; Groselj U
Orphanet J Rare Dis; 2019 Jul; 14(1):172. PubMed ID: 31288838
[TBL] [Abstract][Full Text] [Related]
15. Foundations of a metadata repository for databases of registers and trials.
Stausberg J; Löbe M; Verplancke P; Drepper J; Herre H; Löffler M
Stud Health Technol Inform; 2009; 150():409-13. PubMed ID: 19745342
[TBL] [Abstract][Full Text] [Related]
16. Metadata Definition in Registries: What Is a Data Element?
Stausberg J; Harkener S; Burgmer M; Engel C; Finger R; Heinz C; Jenetzky E; Martin D; Rupp R; Schoenthaler M; Schuld C; Suwelack B; Wegner J
Stud Health Technol Inform; 2022 May; 294():174-178. PubMed ID: 35612051
[TBL] [Abstract][Full Text] [Related]
17. A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research.
Choquet R; Maaroufi M; de Carrara A; Messiaen C; Luigi E; Landais P
J Am Med Inform Assoc; 2015 Jan; 22(1):76-85. PubMed ID: 25038198
[TBL] [Abstract][Full Text] [Related]
18. Potentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE.
Druschke D; Krause F; Müller G; Scharfe J; Hoffmann GF; Schmitt J;
Orphanet J Rare Dis; 2021 Nov; 16(1):494. PubMed ID: 34819135
[TBL] [Abstract][Full Text] [Related]
19. The Quality Evaluation of Rare Disease Registries-An Assessment of the Essential Features of a Disease Registry.
Ali SR; Bryce J; Kodra Y; Taruscio D; Persani L; Ahmed SF
Int J Environ Res Public Health; 2021 Nov; 18(22):. PubMed ID: 34831724
[TBL] [Abstract][Full Text] [Related]
20. Interoperability in clinical research: from metadata registries to semantically annotated CDISC ODM.
Bruland P; Breil B; Fritz F; Dugas M
Stud Health Technol Inform; 2012; 180():564-8. PubMed ID: 22874254
[TBL] [Abstract][Full Text] [Related]
[Next] [New Search]
